Wordle: SMA

A young girl with spinal muscular atrophy made this video with the help of her mom to show how a cough assist machine works. A cough assist is one of the most important pieces of assitive technology a child with SMA can own. Pnuemonia is the number one cause of death for children with spinal muscular atrophy becuase their chest muscles are to weak to cough on their own.


Technology really can put the world at the fingertips of a someone with a nueromuscular disease. The young man in this video talks about the computer programs available to him on a Mac computer. He uses his computer to design an assitive technology newsletter, type college papers, search and download international recipes, and to shop. Computer software gives this young man the freedom to do things he could not otherwise do.


Who says video games must be played with a full keyboard or remote control? The young man in this video has a switch that he uses to play advanced online video games such as World of Warcraft. This video shows that you never know who might be beating you on the other end of the line.


The "pro" assitive tech users vs. the amatuer researchers. The kids vs. the researchers is an annual competition at the Families of Spinal Muscular Atrophy Family and Research Convention. It is designed to help connect the researchers to the everyday problems that the children they are trying to cure face. The children run up and down one side of the obstacle course in power wheelchairs, manual wheelchairs, and with walkers. The adults researchers are attempting the same course in a manual wheelchair. It is interesting to note that the struggle to get around the cones in the manual wheelchairs is legitimate. Kids with SMA are truely professional assitive technology users.


Everyday technology can quickly become assitive technology. This young man uses the Wii balance board to work on his trunk strength and gets to have fun doing it. Maybe one day insurance companies will pay for a Wii when they deny physically handicapped people occupational and physcial therapy services. There are no boundaries to what can be assitive technology.


I chose to include this video not only because it shows pictures of children using various types of assitive technology, but also because the young woman that made the video used assitive technology to take some of the pictures and create the video. The families featured in this video are from Ohio, Kentucky, and Indiana. The children in the video are seen using feeding tubes, various kings of power chairs, standing frames, and ventilators. Some of the children in the video began using power wheelchairs at two years of age. Jenica and I are also in the video.

Until we have a cure, we have assitive technology.